Maeve Binchy

Irish Author Maeve Binchy died this week. She was only 72. I believe I read every single one of her books. They are not important pieces of literature, nor do they pretend to be; but they are interesting, fun novels with wonderful characters. One of her books, Firefly Summer very likely saved me from completely losing my mind in 1994.

It was September, Maggie was six months old. She had already endured five or six fairly major surgeries to repair some of the physical anomalies with which she was born. I still believed that she was going to catch up, that she was having a rough start but once they fixed everything she would be OK. That was the only way I could cope.

Now there was a new problem. Maggie was crying uncontrollably and seemed to be in pain. I went to her surgeon, with whom I had a wonderful relationship. It wasn't anything from her surgeries but I still remember him looking at me and saying "I am very impressed with the size of her head." Somehow I knew that he was  not impressed  in a favorable way, but impressed  as in it was making an impression. I remember very clearly walking home through Golden Gate Park that day with a feeling of dread.

I called her pediatrician and she immediately sent Maggie for an ultrasound of her brain. The radiologist confirmed Maggie had hydrocephalus, a build up of fluid on the brain. We were sent up to UCSF and met with a neurosurgeon just outside the operating room. I still remember he was wearing low top Chuck Taylor's, (converse shoes), which was oddly comforting.  He reassured us and whisked Maggie into surgery. They were going to put in a shunt to get the fluid off her brain. There were complicating factors though. The buildup of fluid was because of a brain bleed sometime earlier. They could not do the shunt until Maggie stabilized. She went from surgery to the Pediatric ICU (PICU) with an external drain coming out of her head.

This has happened several times since and now I know the drill, but that first time was horrific. I felt my dream of Maggie's normal life slipping away. We knew she would be in the ICU for a while, but we had no idea how long. (I believe it ended up being three weeks that time.) Maggie was in an open ward and the noise and drama was very difficult to take. There were beeps and  bongs from every patient. There was emotion at every bedside, including ours. I sat next to Maggie's crib in a high desk chair for days. I held her hand and waited for her to get better. I was going out of my mind.

When Maggie is in the hospital, the most intellectual reading I do is People magazine. I read all about celebrities I never heard of and find out who is dating/marrying/divorcing whom. That wasn't going to cut it this time, though. I needed more; I needed to escape the noise, the emotion and especially the fear.

I brought Firefly Summer to the hospital. I think my sister Mary gave it to me and suggested I read it but it had been sitting at home for several weeks.  The book was long - 672 pages (I just looked that up on Amazon). I doubted I would get into it, but from the first page I was hooked. I sat at Maggie's bedside holding her hand as she slept - and she slept a LOT. I flipped the pages using the thumb of the same hand holding the book.

The noise and drama of the PICU melted away I was transported to the Irish country side. I was lost in a world of young people enjoying a summer as their little world faced changes from development.  I still remember Kate, the main character of that story and I remember there was a young girl named Maggie. I read every moment I could and finished the book in about three days, which is fast when you factor in hundreds of  interruptions  involving very serious conversations with neurosurgeons, neurologists, pediatricians, hospitalists, nurses, respriatory therapists and dozens of other medical professionals every day.

 I couldn't tell you exactly what happened in that book but I know this: That book saved me at one of the lowest times of my life.

I hope Maeve Binchy did not suffer through what I read was a "short illness." I hope she had a good book to read to stave off the pain or fear or whatever she was facing.  It really makes all the difference.

Rest in Peace, Maeve. And thank you.

I'll take crazy mothers for 100, Alex

My post yesterday elicited many responses. A few people mentioned Munchausen Syndrome – or more specifically Munchausen syndrome by proxyThis is a rare but serious mental disorder where the parent – usually a mom – is deliberately MAKING their child sick to garner attention from the doctors. What I referred to yesterday stopped at exaggeration. I am not aware of anyone who has actually hurt their child.

There is nothing funny about Munchausen by proxy, but the term reminded me of a story. 


Really?! How very unusual.

There was a particularly bad period several years ago. Maggie must have had 10 shunt surgeries within three months. Maggie has hydrocephalus, a buildup of fluid on the brain. There is a shunt – or a tube – in her head to take the fluid off the brain and drain it to other parts of the body. Sometimes the shunt gets clogged, or breaks or gets infected. The only repair is surgical. When it is infected, the treatment involves two surgeries, 10 days apart, one to externalize the shunt and one to replace it, once the infection clears. During the 10 days, Maggie is in the intensive care unit with the shunt coming out of her head draining the fluid. Sometimes these things happened in bunches, but this period was horrific. She had repeated broken or clogged shunts, and at least three infections. She would come home for a day or so and then show signs of infection again and back into the hospital, we would go. 

If you think you can imagine the worry and fatigue we were under you are wrong. Triple whatever you are thinking and you are about halfway there. It was bad. You cannot concentrate on anything. You cannot read a book, you cannot finish an article in the newspaper, you sleep in two-hour spurts and you get more than a little rummy. I found things like People magazine to be enthralling. A one-page article about some celebrity was about the limit of my comprehension. 

Maggie was in surgery (again) and I was reading an article in People about a woman in Florida who had Munchausen by Proxy. She had been harming her child using the gastrostomy tube and catheters to put nasty things into her child’s body. I thought to myself, wow! Maggie has both of those things. Then I read that those with Munchausen by Proxy tend to be knowledgeable about medicine, which is how they fool the doctors. I thought, wow, I am very knowledgeable about Maggie’s medical stuff. 

Then I paused. Could they possibly think I was DOING this to her? Never mind that she was not having any problems with her intestines, bladder, or anything else that I could actually access. The distraction provide by People magazine became another source of stress. I was fighting panic on multiple fronts. 

Maggie came out of surgery and went right back into the ICU. The surgery team came up with her. If a patient goes to the ICU, they do not go to the recovery room. The patient “recovers” in the ICU. Her room was full. The team from the OR was there reporting to the ICU team. There must have been 10 doctors and nurses working feverishly. I was standing out of the way. Things calmed down a bit and the handoff to the ICU team was almost complete. Just before the surgery team left, I said to everyone. “I have to say something”

I announced to all these professionals that I had just read this article in People magazine about Munchausen syndrome and if anyone thought I was doing this to Maggie, they were wrong. Everyone stopped and looked at me strangely. One of the anesthesiologists, who I knew by name, came over to me, put his arm around my shoulder, and said, “Uhhh, this would be a tough one to fake.” 
I looked like a complete idiot, but I needed to say that. It was important to me in my exhausted overwrought state that no one was even considering that. They were not, but I am sure they had various other diagnoses for me.

I have not read People magazine since.